The Perfect Life

The Perfect Life

Often I have been asked, by conference attendees who come to hear me speak, what I want out of life.  People are curious if my future includes people, independence, and decadence, or a scary isolated existence.  Not that there is anything wrong with living alone, but I do believe most people are shocked when I say “I prefer to live with someone.”

Money continues to be a large reason why I still am not where I want to be, only because we live in a society where access to money is necessary to live.  I’ve tried not to dwell on that too much, and instead try to enjoy each dollar to its furthest reach.  I don’t need millions, I just need enough.  Still, I think there is no harm in dreaming.  It helps us set goals, and is generated from that inner desire to see the word for all its good rather than the bad.  As I have said before, dreaming is the conceptual art of the inner self.

Assuming money is no object, and my life work blossomed just as I had hoped, then what is the perfect life for me?

I love the ocean.  I would want to be as close to the ocean as I could get, ideally in California, though any warm climate ocean town would be acceptable.  The beach at my back door, or at least in walking distance so I could view the waves anytime I needed to be calm.  My plot of land would be the smallest I could possibly have that would allow for my home to fit snugly.  My home would be a Frank Lloyd Wright Usonian style home, possibly like the Jacob’s house or the Goetsch-Winckler Usonian house.  It would have to have three bedrooms, even after my kids move on, because I would want my children to always have a room to stay in anytime they wish to come home.  Being environmentally conscious, I would love to fit the home with solar panels, and use led lighting. The wonderful thing about FLW homes is all the natural light.  My studio would be in home, where I could record, write, and create on my own.

Image

I’d love to own a Jeep, though I’d love to convert it to a no emission vehicle.  Hopefully, my home would be located in a place where bicycle, walking, or public transit would be sufficient.  I would spend time in town people watching, meeting locals, and learning about the world in which we live.  I would be the owner of an arts school that uses a teaching approach comprised of unconditional love, open to people of all learning types, and offered the most open scholarship program in the US, making sure that even the poorest of students can learn to play an instrument.

Given that my dream means that my financial needs are covered, I would donate most of my free time to helping public and private schools create disability friendly schools with integrated classrooms.  I want the next generation to grow up believing they fit into this world just as much as anyone else.

My perfect life would also include a not-so-perfect someone to live and to share the beauty of life with.  He wouldn’t need to share my interests or be anything like me, just simply be my counterpoint.  You see, to me, love is not like harmony, but really is more like counterpoint.  In music, a harmony supports the melody but is usually secondary to it.  Counterpoint is when two equal melodies are played together to create a complex and intricate sound.  They sound good together, oscillating between supporting the other melody and leading it.  Sometimes the two melodies even argue, but they always resolve in the end.  To me, counterpoint is love.

My perfect life has no specific goals or ambitions for my children.  I would simply just support what ever goals and ambitions they have for themselves, even if I struggled to see it clearly.  Just because we are forever tied together by DNA and by unconditional love, doesn’t mean I have any right or entitlement to insert myself into my children’s picture of their own future.  I must be invited by my children, and continue to love them even if I am not invited.

Finally, my perfect life would leave behind a story that could inspire others, even if it is just one other.  Pain sometimes needs to be shared, so others do not feel alone in theirs.  Yet, beyond that we should freely give away parts of our triumph, not to our own detriment, but in healthy amounts so as to show others that it does in fact get better.  If a spoonful of sugar helps the medicine go down, then be the spoonful of sugar.

There is not much more to a perfect life for me.  Seeing new places in the world is always welcome, and I do hope to travel as a speaker to places outside my home country.  It really is just that calm stability that comes with accomplishment that I seek.

I Am Frozen

As difficult as it is for me to wrote about these things, I feel it is important to share my limitations, hoping that it will help others who cannot put to words these feelings.

Today, I am frozen.  A well intentioned thought process has overwhelmed me and now I am physically, and mentally frozen on the set of tasks I must complete.  I do not know why this happens, and I still do not fully know what to do to get back on track.  It’s a very frustrating place to be.

The Background  

I have always been disorganized.  There is something about filing, prioritizing, sorting, labeling, and following up that I just can’t seem to fully grasp.  After years of struggle, I stumbled upon a method called The Action Method.  I spent a little time on their website at behance.com getting an overview of the method, and playing with the free online software.  For the first time, it felt like achieving some organizational skills was possible.  So, I jumped over to Amazon and bought their book called Making Things Happen.


Reading the Book

I have never had help with dyslexia, probably because I didn’t even know I had it until my late twenties.  All I knew was that reading was a skill I was painfully slow in acquiring, and was almost impossible to maintain.  No one ever asked me if the words were moving around the page or vibrating or flipping around, I was just told to try harder.  Most of my interventions are ones I learned about on my own – colored transparencies to cover up the page, low lumen LED lighting so the light is not too bright or noisy, and a guide to isolate paragraphs.  Some days, however, I just cannot read, even using all my little tricks.

Last night, my reading was good.  I was able to read to page 58, of course skipping over all the examples given by the author.  (My autism seems to like bullet points better than stories.)  Words were clear, staying still, and making sense in my head when I read them.  Unfortunately, duty called and I had to go to work.  Reluctantly, I put the book down.

Today, I tried to pick up from where I left off.  Reading was off the charts with a battery of vibrations and movements, causing my eyes to quickly fatigue.  Motivated by yesterday’s good read, I really wanted to learn this system and get my business organized.  I tried with every possible ounce of effort to continue reading, but I just couldn’t.  Frustrated, I threw the book down after covering only 3 pages in an hour.

Try Something, Anything

I couldn’t read anymore, but maybe I could just apply what I had learned so far.  I understood there were three categories to organize everything into – Action, Reference, and Backburner.  I also understood that I needed to gather all my papers, notes, correspondences, and files in order to begin sorting everything into the three categories.  The method is clear, and concise as well as simple.  My mind easily wrapped around the concepts presented in the book.  It was clear to me that I understood, theoretically, how it all worked.
 
People often rate intellectual ability on action.  If a person behaves in a manner that seem intelligent, or if a person can easily complete tasks that are socially interpreted as intelligent tasks, then people assume that person has a high IQ.  Similarly, people often assume that the opposite is true – odd behavior or inability to easily complete tasks must mean a low IQ.  Both assumptions are wrong.  The ongoing frustration I find in autism is the breakdown between my quick intellectual processing and the translation of that processing into a tangible task.  I understand what I must do, but I am paralyzed by the process of projecting my intellectual world onto my physical world, efficiently and in tact.
 

11:01 am – Frozen

I am sitting at the table, absolutely frozen.  I cannot stand up, my eyes are heavy, my nerve endings in my back and seat hurt, and my mind is in an unstoppable loop.  Trying to touch reality, I grab the pen on the table and start to scribble thoughts down (this works for me, though not for all).  
 
 
 
 
I write:
      11:01 am Frozen – Thinking of process to get new organization method in place.  It is to repeat over & over in my head.  Can not seem to make a loop pause or to stop.
     Pictures in my mind – file cabinet -> piles of paper -> computer -> emails -> taxes -> try to sort & can’t -> Repeats

 

     Question in my mind – Fast voiceover way – How do I know difference in action & backburner?  How many years of bills to keep?  What if IRS takes my EIC again?  Why I feel sad?  Why are eyes sleepy all of sudden?  Why can’t I move from table?
 
This loops over and over again for a length of time I cannot describe.  I only noted the time when I finally had the ability to grab the paper and pen already on the table in front of me and write down what was in my mind.  My hope?  That I would distract myself from the loop and be able to move.  It worked.
 
I was able to get up from the table and grab my laptop.  Trying to avoid the loop, I pushed the book from view and started writing this blog post.  As much as I desire to be productive and organized, and even though this Action Method seems like the first real way I can learn, but  the process has me frozen.  It is a change in my routine.  True, it will be a good change, but change is hard.  It is also a task that is not easy for me to execute, so I must learn to use other mental energy, reserved for other tasks, to put this new system into place.  My brain is not able to store this type of functioning in the place it is pre-determined to go, so I must use a different space in my brain.  This means I am actually using mental effort to “re-wire” my own mind.  It is hard and very tiring.
 
Don’t believe this is possible?  The Human Calculator, Rudiger Gamm, is not a math savant, but learned to do complex calculations on his own.  A scan of his brain, done while he performed math tasks in his mind, proved that Rudiger was using areas of his mind, reserved for other tasks, to do the math.  
 
I believe that my advanced adaptations are done the same way.  I work hard to train myself to use other mental space to complete tasks I am inherently poor at doing.  Though, there are some tasks that are so monumental that I just do not have the mental energy to learn it.  I have helpers for those tasks.
 

Answers

I don’t have any answers.  Each day and in each stage of life, autism presents new challenges.  Some challenges are left over ones from previous years when I didn’t have the skill to cope.  Other challenges are just unveiling themselves as I approach new areas of life.  the only thing that is becoming apparent to me is that I may not be able to totally work alone.  In building my business, I will need to make room for an employee or two that can keep me on track and organized.  I am not giving up on this new method, I just may need help executing the method until it becomes routine.  I still think The Action Method is the best method I have seen to date, and I plan on making it a part of my life.
 
If you take away anything from my story today, it should be that being frozen is quite different from inaction.  If I were presented with help from another and I refused to try, cooperate on any level, or apply what I know I can do – that is inaction.  That is a choice I make.  If I cannot move, or cannot ask for help – that is frozen.  I have no power over myself when I am frozen and all I can do is redirect my mind.

Stuck

I recently posted on Facebook the feelings I am having lately.  Layers of emotions with multiple causes – such as the APA decision to eliminate Asperger’s from the DSM-V, the year of r, 2012, not ending the way I had hoped, changes in my work I cannot control and backlash from my inability to effectively  ask for what I need.

My rant began this way:


Want to know what living with autism can be like some days? Take a day in your life -remove 75% of your income, give yourself a headache, give yourself a stomach pain that gets worse when you are presented with food, surround yourself with people who speak broken English and be sure not to look at them when they speak so that body language is removed from your ability to interpret them. Now, in this setting, go to work, make a living, make friends, and if you have some extra time, remember to build your own self-confidence while having someone come in every half hour to remind you that you are a broken human being (this equals the news media bombardment).
 
Do this everyday until you break. How long would it take for you to give up?
 
Despite the gifts autism brings, don’t forget that those with autism you view as “mild” or “looking normal to you” operate under a barrage of sensory and social issues that run like a noisy machine in the background of everything we do. Before you lecture someone with autism about choices they make or how hard they appear to be working, you try and live life they way we do.
 
People have committed suicide from a condition called tinnitus; a condition which causes a constant ringing in the ears. If tinnitus was my only constant sensory discomfort, I would consider myself lucky.
 
Be careful who you lecture and who you judge. The surface is a cover, not a window.



This was followed by a day of processing as I tried to understand what is happening to me.  My days seem to shift from feelings of hope to feelings of inadequacy, with no in between.  The confusion has my stomach in knots, causing my diet to run in weird directions as I alternate from starving to hating the sight of food.  I hear vibrations, lights are bothersome, and my asthma is a mess.  Despite a lower income this year, all is going fairly well  – great friends, positive feedback from students, recorded a cd, and published a new book – so, I should be in a good mood, generally speaking.  
 
Then what is happening to me? 
 
I know these internal collisions of emotions are typical in people with autism.  Despite my experience and many hours of very helpful therapy, I still get stuck in this vortex – and still seem to never see it coming.  Since the general belief is that autistics don’t experience emotions, the training tends to focus on teaching us how to read other people’s emotions.  There is no effective therapy to date that helps autistics recognize, accept, and regulate their own emotions – or at least there is no effective one for me.
 
This is when a flood of questions enter my mind.  They are always the same questions:

 

  • Why do I feel I am pedaling hard but going no where?
  • Why do I believe that I am destine for greatness while at the same time feel too small to reach my dreams?
  • Why can’t I escape this feeling of being trapped?
  • What is wrong with me that I can’t have the job and home life I dream of?
 
Tomorrow I am going to ease my mind by taking a walk in a place that is familiar and full of positive memories.  I wish I had a streamlined process that would ease this dark side of autism.  There are days…..I just feel stuck.

 

 

bridge

there’s this bridge I’m looking for
i don’t know the way it goes
but I’m sure it spans the distance 
between our shores



on foot’s the only way
to trek this life, all short cuts wane
no one said that building bridges
was the easy toll to pay

 
trees they reach to touch the light
though they have no eyes for sight
clean the air and shade our heads
as we eat our daily plight



there’s just one lesson here today
don’t look me down, with words you’ve made
just close your eyes and sing this song
I’ve been writing all along



my shores are blue and yours are gold
my sun is high and your’s is low
i have 3 moons, you just have one
in the sky when work is done
you see two-thousand twinkling stars
looking up from where you are
but cross the bridge and you will see
a million more including me

 

Not Knowing Emotion or Not Knowing How to Show?

Emotions are difficult to discuss because of their abstract nature.  The way Neurotypical (NT, from now on) people express their feelings to one another really have perplexed me for most of my life.  There seems to be this need inside the individual to have others understand how he or she feels, but a reluctance to “show” that emotion.  Yet somehow the outsider is supposed to read this conflict, decipher the emotion and react properly.  I cannot understand this, but I can tell you that I cannot operate my emotions in that fashion.
I believe that as an Aspie, that I do feel emotions. I see myself as a burn victim of emotions where emotion is so hot and fiery to me that it burns me leaving pain long after the incident.  As a result of that ongoing pain, my interior emotional states and my ability to read the emotional states of others are superseded by my pain.  For me, emotional states and expression must have a place to go and therefore elevate to a more cerebral status.  In other words, I express how I feel with the giving of gifts, analysis of words, presence needs from others and through my special interest.
If we take NT love, for example, between a parent and child, we see a desire in the NT parent to be loved by the NT child.  The NT child shows this by seeking approval from the parent.  You may argue that there is more to it than that, but really human love at its basic is a sort of approval seeking  and validation system (storge).  It is more automatic and linked with familiarity.  Most people want to know they are loved and that what they are feeling is “normal” or valid. When our children become teenagers and stop seeking the approval of their parents, the love between that child and his or her parent must evolve to a more unselfish love, which usually presents a new bond as the teenager enters young adulthood. There is no longer a familiarity to rely upon and for the relationship to survive, the love must evolve into an uncircumstantial love (agape).
With an Aspie child, that system of approval seeking is not there, mostly because we don’t care what others think.  Often times the NT parent misreads this lack of approval seeking in the Aspie child as an inability to return love leaving the NT parent to questions if the Aspie child feels love at all.  In reality, the Aspie child feels love for you but already in that advanced way that adult children hopefully evolve love their parents (agape).  This love is an unselfish love far removed from approval seeking and validation.  Aspie love is not there to fill anyone else’s needs for love; Aspie love is there as a free gift for no particular reason at all.
If NT parents can embrace this love of their Aspie child and release their need for validation, then a wonderful joy will result.  The NT parent will start to notice the unique ways the Aspie child relays love and both will begin to believe their love is always there.  As an Aspie myself and a “burn victim” of emotion, I can tell you that the process of sorting how I feel and how to express my feelings are a long string of laborious, life-long tasks.  There is no greater reward for that hard work than just knowing that my friends and family freely love me, no matter how poor I am at showing my emotion in conventional ways.
Laura Nadine
 

Discovering How I Feel

Imagine you are in your room.  It is quiet and comfortable.  As you slip off to sleep you are confident you are safe in your own bed, among your own things.  After a sound sleep, you awake to a pitch black room – a darkness so dark, not even this smallest bit of moonlight creeps in, so void of light that your ears ring.  You are frightened.  Your sudden awareness that you have awoken in an unfamiliar space is so invasive that you cannot decide to move or sit still.  Knowing the end of your pain is only in the discovery of its origin, you place your feet on the floor and stand.  You stretch your arms out and like the blind, you feel your way around the walls.  Your hands follow the lines of the furniture, a bed, a dresser, a chair – slowly painting a mental picture of what the space you are trapped in must look like in the light.  You feel around for a light switch, a door, a lamp – anything that might give you sight.  Your palms sweat.  Your mind wanders. But you eventually find the door.  The light bursts in and you discover that you fell asleep at home, and awoke in someone else’s bedroom.  How did you get there? Why did it come so sudden? These are questions you cannot answer, but the mere fact you are in such an intimate place as another persons bedroom, means you must find out how and why.
This process of waking up blind in another bedroom is how I experience emotions.  The emotions come suddenly, with no real definition.  I must feel around, tracing an image in my mind, hoping I can discover what it is.  Yet once I learn what the emotion is and the light comes bursting in, I still have to find out where it came from and why.  
People, like me, with autism must put tremendous effort into bonding emotion with understanding.  This is why it angers me when people with autism are accused of laking empathy. It is not that we do not feel empathetic, but rather that accessing that emotion in any real reaction time is excruciatingly difficult. This process is only eased by the patience of those around us, the extension of unconditional love and the freedom to release through our special interests.  So the next time you want to know how someone with autism feels about you, don’t ask them to show you with words and body language.  Rather, let them show you in their own way.
Today, ask someone with autism to take you on an adventure in their world.
Laura Nadine